I'm doing the 6 day methylprednisolone pack for pain and it hasn't helped at all. In fact, I feel like I'm still getting worse. I just started hcq about 2 weeks ago so I'm not even close to getting any help from that. I had to take ibuprofen tonight because I felt so bad and have barely felt anything, if at all. I *never* take pain meds of any kind. What now?
My rheumatologist ordered methylprednisolone for me to take because my flare is getting worse and I've only been on the hydroxychloroquine for a week. The steroid is only 6 days though and she said the symptoms might just come back when I'm done with the treatment so I'm kinda hesitant to try it. Is that enough to actually help make my symptoms chill tf out?
I (28f) have been experiencing what seems like a flare the last couple of weeks that is progressively getting worse and harder to manage. My symptoms are:
- a malar rash that hasn't gone away and sometimes gets hot and hurts
- finger, wrist, hip, and knee joints are very painful and swell all day, and get stiff in the morning and when I'm resting for too long
- very fatigued and have serious brain fog
- the sun gives me rashes and makes my symptoms worse
- lightheaded/dizziness
- constant headaches
- bruising very easily
- sores in my mouth and nose
- swelling in my lower calves/ankles
I have a history of an "episode" of temporary paralysis on the entire left side of my body in 2025 and the weakness has stayed with me since. The did all the tests and scans looking for things like MS and stroke, including MRIs of my brain and spine and a spinal tap, which were all negative. During that time my sed rate and crp levels were high but they never said anything about it. She doesn't even consider this as a possible symptom of whatever I'm dealing with.
In March, my ANA was positive 1:40 homogeneous and my dsDNA was indeterminate. Everything else was normal. I had the labs repeated last week and my ANA was 1:160 homogeneous and my dsDNA was negative (literally went down one point from the last test in March), but she tested for APS and my cardiolipin igm was high (I am aware that I have to wait for a second test in 12 weeks to confirm if this is really a positive result). Again, everything else was normal.
She diagnosed me with UCTD and prescribed me hydroxychloroquine and a steroid to take for 6 days and basically told me to act like I have lupus but didn't tell me how to do that aside from staying out of the sun. She says as long as my labs are normal, she won't diagnose me with lupus officially. She also has blamed almost everything on my Celiac Disease, which has been deemed by my gastroenterologist to be in remission (confirmed by labs and an endoscopy done this month). My gastroenterologist says that the weird labs and symptoms do not fit Celiac at all but she disagrees.
Can anyone explain to me what she's thinking? Or am I right to feel like I'm being dismissed?